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Confidentiality of genetic databases questioned by Stanford researchers

STANFORD, Calif. - In their exuberance over cracking the genetic code, scientists have paid too little attention to privacy issues, say researchers at the Stanford University School of Medicine. Their findings, published in the July 9 issue of Science, suggest that traditional means of ensuring confidentiality do not apply to genetic data and that additional safeguards are needed to protect patients from potential abuses.

"I am surprised that no one has looked at this problem before and asked, 'Can we really release genome-wide information about individuals to the public,'" said Zhen Lin, a genetics graduate student who led the study. "Nobody did a careful calculation to find whether 'anonymous' patients could be identified from this data."

Many hope that in the future, a patient's genetic information will provide early warning of a predisposition to certain diseases or predict how the patient will respond to certain drugs. The relationship between DNA and such traits is usually quite subtle, however, and decoding it may require compiling genetic and medical information from many patients. To this end, the National Institutes of Health is encouraging the researchers it funds to put genetic sequence and trait information in shared online databases.

A 1996 federal law that governs medical privacy requires that research data be stripped of identifying information such as names, addresses and even the last three digits of a patient's ZIP code before it can be shared. But the law is essentially silent on the issue of DNA, and most researchers have interpreted this to mean that sharing sequence data linked to information from a patient's medical history is safe.

"Traditionally people believe that if there is no identifier attached, then the sample is anonymous," Lin said. "We found that's really not true because the DNA code itself is an identifier." To demonstrate this, the researchers looked at specific sites in DNA that commo
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Contact: Amy Adams
amyadams@stanford.edu
650-723-3900
Stanford University Medical Center
8-Jul-2004


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